Clinical Trials for Neuropathy

Posted by John, Volunteer Mentor @johnbishop, Aug 8, 2017

Has anyone participated in a clinical trial for neuropathy? The Foundation for Peripheral Neuropathy (http://www.foundationforpn.org/) has a search program on it's website that allows you to match a clinical trial to your needs by asking a few questions and finding a match. Here is the page on their website:
https://www.foundationforpn.org/research/clinical-trials
If you know of other clinical trials that you can recommend, let us know about them.

John

Interested in more discussions like this? Go to the Neuropathy Support Group.

@darlia

I live in the state of Missouri. I know that KC, St. Luke's Hospital specifically conducts clinical trials in Neuropathy. My thoughts about being involved. Depends on your situation. Personally I would be willing to be involved if the treatment involved medical cannabis because it's natural. At this time though the state of Missouri isn't allowing medical cannabis YET.
WHAT thoughts or info do you all have?
Darlia

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Thanks, John. I've been connected to the Foundation for Peripheral Neuropathy for a while. The only website I've found that offers truly useful information is http://neuropathycommons.org While I just moved back to Missouri after living in Massachusetts, I may request an appointment with Dr. Oaklander who seems to be doing the most relevant research and work with small-fiber neuropathy.

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@steeldove I hear you about the neuropathy. So many people presume if someone has neuropathy to be diabetic or chemotherapy. I do not know why I have neuropathy and it has done me no good to even ask any medical person why I have it. They see depression in my chart and I do not have a chance of getting any farther. Any pain I have is caused by depression. No wonder the depression has gotten to the point it has now. Depression is the reason for everything else negative in a life.

There is no cure and the meds prescribed do horrid things to my psyche.

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I attended the Minnesota Neuropathy Association meeting on August 31st, The guest speaker was Dr. Jeffery Allen, a neuromuscular specialist and clinical investigator, discussed clinical trials at UMN that are currently enrolling and those that are expected over the next year. Including trials relevant to inflammatory neuropathies, diabetes, hereditary neuropathies, and others. The main part of his talk was about painful diabetic neuropathy and his research and involvement with an ongoing clinical trial for VM202. Medication is injected into the calf muscles and may promote blood vessel growth and nerve regeneration. I attached a PDF with details for the clinical trial which is part of study Gene Therapy for Painful Diabetic Neuropathy listed on the ClinicalTrials.Gov website.

More locations are specified on their website here: https://www.clinicaltrials.gov/ct2/show/study/NCT02427464?show_locs=Y#locn

Also, there is an article "VM202 gene therapy eases symptoms in painful diabetic neuropathy" on Diabetes.co.uk website about the treatment:
http://www.diabetes.co.uk/news/2015/Mar/vm202-gene-therapy-eases-symptoms-in-painful-diabetic-neuropathy-91359885.html
John

Shared files

VM202-Trial (VM202-Trial.pdf)

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Just wanted to share this, for anybody who's interested in participating in medical research studies:
https://clinicaltrials.gov/

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Any information on new CIDP Study using Dual-Target CAR-T Cell Therapy

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@steeldove

Thanks, John. I've been connected to the Foundation for Peripheral Neuropathy for a while. The only website I've found that offers truly useful information is http://neuropathycommons.org While I just moved back to Missouri after living in Massachusetts, I may request an appointment with Dr. Oaklander who seems to be doing the most relevant research and work with small-fiber neuropathy.

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Where is he??

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@nbailey7uh2edu3

Any information on new CIDP Study using Dual-Target CAR-T Cell Therapy

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@nbailey7uh2edu3 - Have you seen these articles?

-- BCMA-CD19 bispecific CAR-T therapy in refractory chronic inflammatory demyelinating polyneuropathy: https://www.sciencedirect.com/science/article/pii/S2949928324000440
-- CIDP study explores dual-target CAR-T cell therapy for the treatment of relapsed/refractory autoimmune disorders: https://medicalxpress.com/news/2024-06-cidp-explores-dual-car-cell.html

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In reply to @bettyg81pain "Where is he??" + (show)
@bettyg81pain

Where is he??

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@bettyg81pain - If you mean Dr. Oaklander, she is at Massachusetts General Hospital -
https://www.massgeneral.org/doctors/17253/anne-louise-oaklander

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@johnbishop

@nbailey7uh2edu3 - Have you seen these articles?

-- BCMA-CD19 bispecific CAR-T therapy in refractory chronic inflammatory demyelinating polyneuropathy: https://www.sciencedirect.com/science/article/pii/S2949928324000440
-- CIDP study explores dual-target CAR-T cell therapy for the treatment of relapsed/refractory autoimmune disorders: https://medicalxpress.com/news/2024-06-cidp-explores-dual-car-cell.html

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It was the second article you sent that I had seen. I had not seen the first. As my condition slowly increases, I would like to reverse it, at least until I am 100 - and I have 13 years to go. 🙂

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